#T1Dinsights: life with type 1 diabetes

We approached ten active T1D bloggers (plus an 11th volunteer referred by a participant) to take part. Our respondents were aged 27-45yrs old (average 36yrs old) and had been diagnosed anything from 3 to 31 years ago (average = 17yrs). 55% of our respondents were insulin pump users and self-reported that 27% felt ‘quite’ in control, 27% ‘moderately’ in control and 46% ‘very’ in control of their condition. No one considered themselves only ‘slightly’ or ‘not at all’ in control.

Each participant received a short questionnaire and a pack of Sugru (plasticine–type modelling material) and they were asked to create a model that expressed what it felt like to have T1D. They were also asked to take photos of anything important to them when managing their T1D. We didn’t ask specific questions about the devices they were using, but instead set out to discover more about what it’s like living with T1D. Having analysed their responses we identified a number of design challenges which, if addressed, could help improve the lives of those with T1D.

As medical device designers, we try to take a holistic view of the problems we are trying to solve. One important aspect of this is to understand what people think about their current devices so we can come up with ideas for improvements or innovations. But another important aspect is to try to really understand what people are going through when managing a life-long condition.

This means not just looking at their physical interaction with a device, but also how devices and medication can be integrated with other medications and/or devices for other conditions they may have, as well as anything else they may be using or be part of to manage their health; such as accessories, smartphone apps or community groups. We should then look at how all of this integrates with life in general. A consideration of this bigger picture could lead to innovations which could make a real difference to people’s lives.
“You’ll just figure out what insulin dose works for you; then bam! The wind changes and suddenly the exact same meal you had two nights ago requires significantly more insulin; or significantly less.”  @_My_Sweet_Life

 

What follows are some of the challenges we uncovered as a result of this research – expressed as ‘how might we’ statements – and presented using quotes and photos from our respondents. They are not exclusive and are definitely not exhaustive, but instead are designed to give a snapshot and hopefully an insight into what it’s like to have T1D.

It should be noted that all of our respondents are very active in the management of their diabetes and many are actively raising awareness and campaigning for improvements in, and access to T1D therapies for all sufferers around the world. These people could be said to be managing their condition well and yet they are still struggling – so, we can only imagine what it might be like for those who are not so in control.

So let’s now think ‘how might we’…

…help patients ‘escape’ the burden of T1D?

T1D is relentless. It’s a burden that’s with you 24/7 and there’s no escape. It is part of you – a shadow hanging over you that you can’t ignore and brings with it a sense of injustice – ‘why me?’ T1D causes a rollercoaster of emotions and ongoing complications, and depending on where you live, you can struggle to access the medications you need to stay alive. Not only does it impact you, physically and emotionally, but it impacts those around you too.

“People don’t understand diabetes. They often assume that I caused my diabetes through an unhealthy diet and lack of exercise. Living with the stigma caused by misconceptions is sometimes hard.”
@coreylearn

“T1D is relentless. It is like playing a game, a game you can be winning at times but never complete or get a break. Just one day off, maybe on my birthday, would be nice.”
@diabeticbanana

“It means I have a second full time job. One with no holidays or time off and one where I have to work harder whenever I’m sick”
@davidcragg

“No decisions are ever taken without considering the impact of T1D- even simple things like deciding to going to bed”
@shauntheram

“Test – bolus – eat – repeat”
@t1diabetesblog

“I manage as best I can with the tools I’ve been given. I am currently struggling to maintain a sensible range whilst awaiting a funding decision on an insulin pump that should allow me to manage better.”
@davidcragg

“That my CGM (Constant Glucose Meter) goes off in the middle of the night and wakes my husband. I feel horrible he has to go through that…he never asked for T1D”
@coreylearn

…help patients balance constantly tipping scales?

T1D is a constant juggle between counting carbohydrates, calculating insulin, pricking fingers, doing injections, and using insulin pumps multiple times a day. Almost as soon as you think it’s under control, things change for apparently no reason. When blood glucose levels are out, you feel absolutely dreadful and frustrated that you couldn’t keep things under control even when you’ve done all you can and so you lose confidence in your ability to manage your condition.

“T1D is a lifestyle of balance. Constantly balancing the level of glucose and insulin in your body”
@diabeticbanana

“Can be fine one day then BAM like a tornado suddenly your blood glucose is low and you’re sweating, shaking and feeling horrible. You eat sugar and the immediate feeling is gone but then you’re left with the aftermath – feeling wiped out, sad, mad, frustrated.”
@coreylearn

“One day things are perfectly fine and the next day blood sugar levels could be totally chaotic. There are so many factors that contribute to a good or bad diabetes day (e.g. stress at work, emotional upset, illness, heat…) that not a single day is the same.”
@Evita2611

“You’ll just figure out what insulin dose works for you; then bam! The wind changes and suddenly the exact same meal you had two nights ago requires significantly more insulin; or significantly less.”
@_My_Sweet_Life

Type 1 diabetes is about balance. #T1Dinsights #T1D #doc #diabetes @team_medical @sugru pic.twitter.com/atMyXQ0b3s

— Kris & T1D (@diabeticbanana) September 16, 2015

“I had a bad few weeks in August and I lost all my confidence in managing my levels because they were so unexpected and unpredictable.”
@diabeticbanana

…help people store and transport all the bits they need?

To manage T1D you need a LOT of stuff – test strips, needles, insulin, continuous glucose monitor (CGM), injection pen, insulin pump, sweets, energy drinks and more. Whether you’re at home or out and about, it’s challenging to store or carry all this ‘stuff’, and what’s more, finding a convenient way of carrying what you need with you can be challenging.

“Without the needles, lancets, test strips, glucose tablets, ketostix etc. I wouldn’t be here – I guess that makes them important, so important an entire kitchen cupboard is dedicated to storing them… and of course insulin can be found in the fridge where the eggs should be”
@davidcragg

“I need to plan everything I do… Constantly checking and rechecking that you’ve got all you need before you leave the house.”
@stresseddiabet

“During my twenties on nights out I would take a small shoulder bag stuffed with my insulin, glucose monitor and sugar with me. It wasn’t really the suspicious questions from bouncers and ribbing from my mates about the handbag that became a drag, it was the fear of losing the damn thing (which I did more than once) that would get me down. These days I go out with everything stuffed in my pockets. This is a chore.”
@DiabeticDadRuns

…help patients feel a sense of normality?

Devices + meds = life for a T1D patient; they are very reliant on them, forming strong attachments even to the point of giving them names such as ‘Dex the Dexcom’ or ‘Iain the insulin pump’. For many, a CGM or insulin pump also brings another degree of freedom from regular finger pricking and injection pens, and a glimpse of what it could be like to be ‘normal’.

“having the pump and CGM…basically felt like someone handed me a box and said “here; have a touch of normality back!”
@_My_Sweet_Life

“Absolutely indispensable: My waterproof pump! I used to be on pen injections of up to 7-8 times a day with one injection every morning at 4am. For this reason and my sport I changed to a pump over 10 years ago which totally changed my life. For the first time ever I was able to have a lie-in and exercising with the pump made it so much easier to control sugar levels… Also, after 30 years of finger pricking, my poor fingers finally get a rest.”
@Evita2611

“Dexcom is my best friend. I don’t know where I’d be without him”
@coreylearn

“My insulin pump has changed my diabetes self-management for the better. It’s a huge part of my life now and I have become quite fond of him. My life wouldn’t be the same without my pump (Iain)”
@ninjabetic1

…alleviate constant worry and concern?

T1D is a constant worry, perhaps even more so for those who are in control and actively managing their condition – these are patients with high expectations who don’t want the disease to get the better of them. There’s also the constant worry about whether things are OK, and about preventing or dealing with other possible complications – even your body just giving up in the middle of the night.

“You can never be care-free….pressure, anxiety, stress of just keeping ‘in control’ (which you never fully are!)”
@shauntheram

Photo: @ninjabetic1

“The worry of my body packing up prematurely and dying an early death… [and]…night time hypos: The scariest thing about diabetes is the fear of going to bed and being woken up by the wife or paramedics in the midst of a fit… or not waking up at all. I’ve had some awful night time hypos in the past and injured myself when convulsing. Sometimes I roll back to sleep and don’t remember anything of it in the morning, but I know I’ve had one because there will be an empty bag of dried fruit next to the bed and I will have an horrible, cloying sweet taste in my mouth”
@DiabeticDadRuns

“I have an acute fear of hypos”
@_My_Sweet_Life

…encourage the positive emotional responses that T1D brings?

All survey participants had found release, companionship, and a sense of belonging by blogging about their condition, raising awareness, forming and working for charities, and joining communities on and offline with other T1D patients. This is obviously a very important aspect of their wellbeing and contributes significantly to their ability to cope with the condition. As a result of this positive attitude, many did more than the average ‘healthy’ person – taking part in extreme endurance sports for example, climbing Kilimanjaro, or travelling to the far corners of the world.

“My husband. We met because of type 1 diabetes. He has it, too… We support each other and help each other manage T1D as a team”
@erpfiester

“My T1D path led to a different city, new career and where I met my partner.”
@diabeticbanana

“Peer support…removes the sense of loneliness and gives you the emotional support to compliment the HCPs technical support”
@davidcragg

“I think it has given me the drive to push myself to do things I perhaps wouldn’t have tried otherwise. In 2018 I hope to become the second type one diabetic to complete the Marathon des Sables, a 150 mile footrace across the Sahara Desert.”
@DiabeticDadRuns

“After crossing the finish line of an epic Ironman triathlon in 2012…[it] meant a lot to me and proved to me that there is no limit to what I can achieve despite my diabetes. It was hugely empowering for myself and a proof to a lot of people that a diabetic can safely achieve what a healthy person can do, too.”
@Evita2611

…promote good diet and exercise as a way of controlling blood sugar?

Having T1D encouraged our respondents to become more health conscious. Eating a low carb diet goes a long way towards maintaining ideal blood glucose levels, while exercise delivers significant benefits for all our respondents in terms of mood and insulin sensitivity.

“Avoiding carbs: My control has become so much better since I began avoiding starchy carbohydrates and eating a high protein diet.”
@DiabeticDadRuns

“I’ve found running to be one of the best ways to level out my blood sugar. It’s also good for my mood (I think the impact of fluctuating blood sugar levels on one’s mood is often overlooked).”
@DiabeticDadRuns

“Regular exercise has a very definite effect on my insulin sensitivity then I do make sure I do some most days; even if it’s just a walk — which without T1 I may have more days that I just don’t bother…”
@_My_Sweet_Life

…connect the devices with the emotions of the disease?

Suffering from a condition like T1D brings with it so many emotions, both positive and negative, and also a heavy reliance on – and attachment to – devices. Connecting these two things can only be a good thing for device makers or pharmaceutical companies to empathise with their patients.

“when my ‘kit’ is working well (CGM particularly), I now feel significantly more in control — but sometimes the sensors for the CGM are very erratic too, which then throws me off balance again…. without the CGM I definitely felt that T1 was in control of me. I can’t imagine going back to a life without the CGM because of the fact it gave me back a huge part of my life via feeling I had greater control again.”
@_My_Sweet_Life

“My insulin pump has changed my diabetes self-management for the better. It’s a huge part of my life now and I have become quite fond of it. My life wouldn’t be the same without my pump (Iain)”
@ninjabetic1

“Medical technology helps me achieve the kind of life I want to live”
@T1diabetesblog

Our final thoughts

This small piece of research has given us a much better understanding, and appreciation, of what someone with T1D has to go through, and how it feels to manage the associated physical and emotional demands – and that’s very valuable.

The insights we gain from this type of research will guide innovation and help us think about designing more intuitive devices, helpful apps or services, or even something completely new – inspiring us to come up with ideas that will really make a difference to people’s lives and the management of T1D.

We’d like to thank everyone who took part and everyone who helped shape our research from #GBDOC, JDRF, Our Diabetes #ourD, T1International and Team Blood Glucose. Thank you.